Dr Carmel Harrington, part of the Sudden Infant Death Syndrome (SIDS) research team at Children’s Hospital Westmead and Sydney University has taken an unusual step by calling out for crowd-funding assistance.
Desperate to find a solution, she and the team are very close, but the money has dried up and that means the potential answer they see hovering so nearby could go uninvestigated unless they get some funds, and quickly.
Harrington’s passion goes beyond science. It’s personal. Because 28 years ago her darling son, Damien went to sleep just shy of his second birthday and never woke up again.
It might have been nearly three decades ago, but the pain remains and it’s only now, because of this desperate need for more funding that she feels it’s time to tell Damien’s story.
To donate to help this ground breaking research head to the Damien’s Legacy page.
Dr Carmel Harrington’s son Damien died in his sleep just shy of his second birthday.
Damien was a healthy, happy, beautiful boy
Damien and Charlotte were twins, nearly two with an almost telepathic relationship.
“I would say something to them both, and Charlotte would look toward Damien, and he would babble at her in baby twin-talk, kind of translating and off they’d go to do whatever I had asked,” says Harrington.
“It’s such a unique bond, and they really had developed this way of communicating with each other, it was incredible to see.”
Charlotte wasn’t as healthy as her brother, spending a lot of time in hospital for various appointments and surgeries. This meant that their older brother, almost four-year-old Alexander and Damien formed a special bond of their own too.
“Alexander had been teaching Damien how to speak,” Harrington recalls fondly. “He took great pride in pointing out images and teaching Damien the words for them, simple things like car and truck, but he loved teaching his brother how to talk.”
While Charlotte and Alexander were wild, Damien was calm and peaceful. “He was always very gentle, very easy to be around,” says Harrington.
Damien had a close bond with both his older brother, Alexander and his twin sister, Charlotte.
“It was the best sleep I’d had since they’d been born,”
Harrington had recently switched careers, leaving her job as a research biochemist – ironically because she’d found the funding model to be too frustrating – to begin a career as a lawyer. It was a busy time.
With the twins birthday looming, Harrington took all three children in to meet their father at his work so that they could all go shopping to find bikes for Damien and Charlotte’s upcoming birthday gifts.
“It was chaos,” laughs Harrington. “With the three children under four looking at bikes, it was a wild day, so we decided to leave it and pick them up the next day instead.”
While Charlotte and Alexander were wild, Damien was calm and peaceful.
Later that night they put the children down, and as usual Damien went off to sleep easily, sleeping on his tummy was his go-to position.
“Charlotte was a different story, she was a sick baby so she had a very fragmented sleep. She would wake us three to four times throughout the night, never really settling the way that Damien did,” recalls Harrington.
“My husband checked on them at 11pm before we went off to bed, and we expected to check them again when Charlotte woke us, but she never did.”
Unusually, Charlotte didn’t wake them throughout the night this evening. “We hadn’t been disturbed, it was the best sleep I’d had since they were born.”
It was 7am before their dad went in and found Damien in the exact same position he’d been in before.
He was dead, and had been dead for some time.
Little Damien went to sleep, and never woke up.
“All of our lives were ripped apart,”
“That was when the nightmare began,” says Harrington. “The poor children had no idea what was going on. We had no idea what to do with ourselves. We called an ambulance and then the police came. We eventually went to the hospital and that was when it hit. He was gone.”
“You think children won’t understand death, but they did,” says Harrington, recalling that little Alexander asked, ‘Who am I going to teach to talk now?’.
For Charlotte the loss was the most significant, she had a hard time going to sleep at all, and for many months afterwards refused to go to sleep laying down. Instead she would sleep sitting up, propped by cushions.
“One day there was a horrific scream from her,” recalls Harrington. “I went in and she was pointing at her doll who was laying face-down.”
Because of her science background, Harrington found it difficult to process what had happened when there was simply no answer. Her healthy baby boy had gone to sleep and died and nobody could tell her why.
“Research was difficult in those pre-internet days” she says. “But doctors were saying to me that what happened was tragic but they didn’t know why and all I could think was this is happening to healthy babies, what are we doing?”
Dr Carmel Harrington is determined to do whatever it takes to find an answer to why otherwise healthy babies die in their sleep.
Harrington’s husband, family and friends begged her to stop researching, claiming it made her too upset and that she had to get on with her life, but still she searched and searched for answers in the time that she had spare.
Something that kept coming up was the autonomic nervous system, and how a deficiency in this system that governs your flight or fight responses and protects you while you sleep could be the reason that some babies die through the night.
Harrington was still working as a lawyer three-years-later when she got the call that her friend’s baby daughter had died overnight in her sleep.
“I’d seen her the day before at our playgroup. Her daughter was laying face-down in her pram and I wanted to tell her not to do that but I just couldn’t. Nobody in that group knew what had happened to me, and I just didn’t know how to bring it up, or even if she would listen to me.”
But the next day that horrific call came and it was an on-the-spot decision that saw Harrington walk in to her boss immediately and quit.
“I just said I can’t do this anymore,” recalls Harrington, who went on to do her PHD and focus on research into SIDS.
Damien and his twin sister Charlotte had an almost telepathic bond.
“Charlotte didn’t have a second birthday, she had a funeral to attend, it was heartbreaking. So for her third and fourth birthdays I had two cakes at the party because I thought that seemed the right thing to do. Then before her fifth birthday she told me that her birthdays were too sad because we always had to remember Damien and I just thought, ‘What am I doing to this poor kid?'”
Throughout all of the hard times, Harrington continued her research, and finally – all of these years later – feels like they are getting close to an answer. Except the money has run out.
“I know crowd-funding is highly unusual for medical research, but I’m determined to do whatever it takes to follow this lead we are currently chasing,” she says.
“Other experts are encouraged by what we have found, and they have all said we need to follow it, so we will, and hopefully this crowd-funding works and we can do it now.
It’s the small donations that matter. “People think $2 and $5 doesn’t add it, but it does, if every parent could do that we’d have enough to do what we need.”
“I cannot say with certainty that our new discovery will keep every precious baby safe, but even if it doesn’t it will definitely add to our knowledge of this tragic problem and bring us closer to a time when all parents can be assured that when they put their beautiful baby to sleep they are safe.
“They will not have to suffer the horror, that so many mums and dads have had to suffer, of finding their baby dead in their cot.”
To donate to help this ground breaking research head to the Damien’s Legacy page.
